Learning to Live Again One Breath at a Time

Month: October 2016

I’ve always been an anxious person. Even as a young child I habitually anticipated the worst possible outcomes that could result from innocuous daily events. For instance, in kindergarten I purposefully missed the bus on field trip days because I was convinced that I would somehow get lost and never see my family again. Similarly, I lived in a state of perpetual terror that my mother was going to die each time she left the house to run errands, and I would haul my infamous blue stool to the living room window and wait for hours on end for her to return. I hated going on boats and refused to venture into the deep end of any swimming pool due to the possibility of drowning. At age 30 I still don’t have a driver’s license because of my fears about the carnage that may ensue each time I get behind the wheel.

Despite these early catastrophizing tendencies, somehow I managed to get through the bulk of my childhood and young adult years without my anxiety interfering with my daily quality of life. That is, until I began embarking on my doctoral studies at the ripe of twenty-four. It has been aptly argued that the hyper-competitive nature of graduate school, in conjunction with the precarious job prospects that await doctoral candidates in an increasingly neoliberal academe, creates the perfect storm for otherwise dormant mental health issues to ignite with unprecedented fervor. While I had always been prone to anxiety and worst-case scenario thinking, never before did these tendencies take such an excruciating toll on my physical and mental well-being.

I will never know with certainty if my experiences in graduate school were the catalyst for my ongoing battle with generalized anxiety disorder. All I know is that my anxiety spiked to unprecedented heights during the final year of my PhD when I discovered I was pregnant. Don’t get me wrong, there were days when I was quite confident that Leah would be born healthy, and I was able to imagine the bright, love-filled life that we would share together. But there were other days when the possibility of my daughter making it into the world unscathed seemed too fantastical to be true, and imagining a positive outcome for my pregnancy made me feel like I was chasing rainbows.

Image credit via QuickMeme

Still, during the months that I carried Leah I always had contingency comforts to fall back on. I could often talk myself out of my recurring anxiety spirals by reasoning that there was no life precedent or statistical reason why my baby would die. When science did not offer sufficient comfort, I could seek solace in my faith that God loved my daughter and would protect her from harm. And if I still couldn’t muster belief that Leah would come into the world safely, I drew consolation from the steadfast confidence offered by the people around me that everything would be fine. I reasoned that they must have all known something that my anxiety prevented me from seeing, and their certainty was enough to keep me going when I teetered on the brink of hopelessness.

Which brings me to my current situation. With four grueling months of grief behind me, I now find myself looking toward the future with unsurprising trepidation. While I have begrudgingly accepted that my life will simply never be what it could have been had Leah survived, I still ache to have a living child to love and care for. Yet I cannot look too far ahead without being besieged by the fear that I will never have a living child. Simply put, I have already landed on the wrong side of the statistics once before, and my anxiety will not be placated by fact-based arguments or faith-based platitudes.

When I now confide in my loved ones about my fears of future losses and secondary infertility, they all remain unwaveringly confident that I will have a living child in the near future. I don’t exactly resent their optimism; after all, I can’t fault them for not wanting to believe that I may spend the rest of my life as a childless mother. But as the people around me offer their unsubstantiated certainties and then continue on with their lives, I have no choice but to confront the unpalatable realities: My “young and healthy” body, in conjunction with all my planning, precautions, and excellent prenatal care, did not bring Leah into the world safely. Similarly, despite my faith and heartfelt prayers, God did not protect my child. Since science and faith both failed me the first time around, there is literally no foundation to support any hope that future pregnancies will reap different outcomes.

Indeed, it seems that I am the only person in the universe who questions whether I will end up with a much-coveted rainbow baby and all that it symbolizes. For those who are not part of the loss community, a rainbow baby refers to a child that is born after miscarriage, stillbirth, or infant loss. More importantly, the term denotes the calm and beauty that a new baby brings after the tumultuous storm that loss leaves in its wake. For many loss mamas, the hope for a rainbow baby holds the promise of future joy and peace in the midst of soul-crushing grief, so it stands to reason why this term holds so much significance in the loss community.

Yet like some other loss mamas that I’ve connected with throughout the past four months, I remain ambivalent about this term. While I can certainly appreciate why so many parents take comfort in the “rainbow” terminology and its connotations, it simply does not resonate with me at this time. I do not foresee myself referring to any future children I may have as rainbow babies, and I have two key reasons for this.

First, I am cognizant of the unfortunate but sobering reality that not all loss mamas get a rainbow baby. Just as one pregnancy does not guarantee future fertility, and just as every pregnancy carries risks of complications, there is no mystical promise that loss parents will go on to have a living child. The truth is that many mamas endure the agony of multiple losses, and many others live their lives as childless mothers. To that end, loss mamas with no living children often find themselves further marginalized by the loss community’s sweeping preoccupation with rainbow babies, and I do not want to deepen their sense of isolation.

Image credit via MemeGenerator

Second, I know myself too well to naively believe that bringing a future baby home will instill any sense of calm in my life. The ever-raging storms that are my anxiety and my grief for Leah will not simply dissipate if I am fortunate enough to have a living child. In my life, death is no longer an abstraction that only happens to other people’s children. If death can strike my physically healthy 7 pound baby at the tail end of a complication-free, full-term pregnancy, it can also strike any future children I have long after they have left the womb. Rather than relishing in the calm after the storm, I know that I will spend the bulk of my waking and dreaming moments anticipating the innumerable tragic events that could befall my future children at any given time.

Similarly, while I do not discount that having a living child will bring new joy and love to my life, a “rainbow baby” will not bring a peaceful resolution to my grief. My firstborn daughter is dead, and I will grieve for her and the life she never got to live until my dying day. For every moment of sunshine and laughter that I may share with future children, I will reflect on all the beautiful moments that Leah never got to experience. For every milestone that her siblings surpass, I will think about all the steps that Leah never took and the words she never spoke. With each passing year wherein my future children grow, change, and emerge as individuated adults, I will think about the person that Leah might have been, but whom I never got to know.

Perhaps these resolutions seem self-pitying and defeatist, but in reality they are simply self-reflexive and honest. While my grief may be exacerbated by my ongoing mental health battles, I imagine that any parent who has felt their child’s body go limp and cold in their arms knows that nothing can ease that depth of agony or rectify the injustice of their child’s unlived life. At the end of the day, nothing will change the fact that my daughter was deprived of a lifetime’s worth of birthdays, Christmas mornings, and more love from her mama than I ever thought possible. In the meantime, I continue to search high and low for fertile ground that might sustain the hopes and dreams I have for the future. Despite my tireless efforts, however, I still don’t know where to plant them. Somewhere over the rainbow, perhaps?

I am honoured to share the following guest post by fellow loss mama Bethany Horst.

I am a musician. Not only has singing become my vocation, but it is an integral part of my identity. I sang as soon as I could talk, I am told. Music has long been my main vehicle for expression, for communication, and for sharing with others.

Separate and apart from my professional engagements crooned the soundtrack of my life. Beyond my own singing, I taught singing to many. I began to procure, refine, and collect the songs I would teach my children. The music that would fill our household. The first melodies and lullabies my babies would hear. A catalogue of comfort. Stories told through music. Tunes destined for the family I had planned.

As I prepared these lullabies, life happened. I travelled the world, sang, acquired degrees, waitressed, moved, married, was widowed, married the love of my life, and found myself pregnant with our son. Our long-awaited, always wanted, ever-planned-for boy. And so I sang to him. Songs to soothe, to bond, to celebrate, to teach, and to reflect.

We shared a beautiful pregnancy. We shared a mostly beautiful labour. But as the hours wore on, even the swift and skilled surgery that eventually brought him out of my body was not enough to save him.

Elliot Jamieson Pepper died during delivery on May 19, 2016. The body we had shared for 40 weeks, 4 days, had also exposed him to a common virus, and with no signs of distress, he died at the very moment of his birth.

And so did the lullabies. There was nothing left to sing.

In the darkness of those early days of grief, I could never catch my breath. I felt like I was drowning. Cruelly, there was just enough air to sustain me. And no matter how insurmountable the pain, I also could not bring myself to stop kicking. Trapped somewhere between death and surviving.

But that same kicking, that same remnant of oxygen, kept the lullabies alive. Unsung, for now, but only dormant, not forgotten. To acknowledge he was here. To acknowledge hope. To maintain a piece of the me I used to be.

So we sing one of Elliot’s songs, to remind us all that morning comes again, relentlessly. Who knew the lullaby I prepared to shield little minds from nightmares and darkness would have no place to land but on my own grief. And so I reach for the light.

I am honoured to share the following guest post by fellow loss mama Danielle Ridgway. You can read more about her journey on her blog, Jensen Grey.

I believe there are moments in all of our lives that define who we are and ultimately change our lives forever. For some, these moments involve getting married or landing a dream job. Thankfully, many of these events transform our lives for the better.

One such moment occurred when I discovered I was pregnant with my first child. My positive pregnancy test was the greatest birthday present I could have asked for, even if it was a big surprise. In the first moments after that smiley face flashed across the test screen, my mind began planning out the rest of my life. During the days and weeks that followed, I kept envisioning a future for the life that was growing inside me. I was never sick or tired throughout the first trimester; instead I was happily glowing from the inside out. We picked out possible names for a girl and a boy, even though I already felt that this baby would be my brave son.

At the twenty week anatomy scan, we discovered that my growing suspicion was correct. A little boy made himself known to the world, and we all yelled out his name through tears of joy: “Jensen!” In that moment I imagined years of football and catch games in the backyard. But this was not the only important piece of news we received that day. We learned that our precious boy, our Jensen, had a very thick neck, which could mean a number of different things, but most likely pointed to Down syndrome.

This defining moment threw a minor wrench in our future plans, but I could still see Jensen playing sports, reading, and letting his imagination grow to the highest of highs. I knew I would love him no matter what, and we were even going to be able to see him twice a week until he was born so that his growth could be closely monitored. What expectant mom doesn’t want to see her baby that often?

As Jensen and my belly both continued to grow, my love for him did too. I found out he loved chocolate milk and macaroni and cheese. He would dance whenever I played music, and he loved hearing me read to him. Each night I had to lay on my left side or he would kick me until I complied. Every spare moment I had was spent planning for his arrival. His dad and I attended all the prenatal classes and prepared the coolest navy and orange nursery I had ever seen. Our family threw a baby shower for the both of us and soon enough we were all ready for Jensen’s arrival. All we had to do now was wait for him to grow big and strong enough to take his first breath outside my belly.

On Thursday, March 31, 2016, I saw Jensen dance across the ultrasound screen for the last time. Just as he did at our previous appointments, he practiced his breathing and held his hand next to his face. Each time the ultrasound technician went to his face, he posed so they could get a good picture of him. As we walked out to the car afterward, I said to him, “The next time we’re here you’ll be making your arrival.”

I never could have anticipated the full magnitude of truth in those words.

My scan on April 4, 2016 started off as a regular appointment. However, this quickly changed when the technician called the doctor in. That’s when we heard the soul-crushing words: “There is no heartbeat.” My lively, brave boy had gone to sleep the night before and didn’t wake up. I was in shock. Surely this didn’t still happen to people in the twenty-first century. It especially didn’t happen to mothers who did everything by the book and had bi-weekly ultrasound scans. Maybe they made a mistake? This simply couldn’t be true.

We rushed to the hospital only to learn that his heart still wasn’t beating. I was induced at 11pm that night and went through a very quick labor. My Jensen Grey was born still on April 5, 2016 at 4:25am. With the exception of his curly blonde hair, he looked just like his mama. His pouty lips, button nose, and chubby cheeks could light up a smile on anyone’s face. He was absolutely perfect at 7 pounds 1 ounce and 19 3/4 inches long. His big hands and chubby fingers resembled his uncle’s, and his feet looked just like mine as well. I still cannot believe that I created something so beautiful.

The days following his birth were the darkest I’ve ever experienced. It felt like all the light in my life died with him. Jensen was cremated and returned to me the day of his funeral. The service and urn were almost as beautiful as my precious baby boy. Suddenly the life I had been planning since seeing that positive pregnancy test was over. I was left to pick up the pieces of my broken heart and figure out how to put everything back together—a process I’m still working through and probably always will.

It was during these early days of grieving that I first stumbled into the loss community. I have since found incredible love and support from other bereaved mothers who understand and share in my pain. Even on the most difficult days I am reminded that I’m not alone in my struggles. Similarly, my sweet Jensen’s spirit continues to give me the strength I need to keep going and share our story of love and loss with the world.

It’s been just over six months since my brave boy left my womb to venture ahead into the unknown. My love for him has only continued to grow during this time, just like any mother’s love expands with each passing day. This love allows me to wake up each morning and dedicate my days to him, as well as to help other bereaved mamas in their own journeys.

While Jensen’s death is a defining moment in my life, it does not solely define who I am or who he is. The choice to always love him, as well as to speak up for him and all his friends in heaven, ignites my passion each day. I choose to live my life for him and do all the things that he will never get to do himself. The moment that truly defines me is the one in which I became Jensen’s mother. Nothing and no one can ever take that away from me.

Today is Pregnancy and Infant Loss Awareness Day. On this day, everyone who has loved and lost a child is invited to participate in the Wave of Light by lighting a candle at 7pm and letting it burn for an hour. If everyone does this in each time zone, there will be a continuous wave of light across the world throughout the day.

Because I am away at a conference this weekend, last night I lit two candles—one for Leah, and one for the other angel babies whose names and legacies I have been privileged enough to learn about since joining the loss community four months ago. I have personally known some of these babies’ mothers for years, while others I have only gotten to know since my daughter’s death. Still others I only know from a distance through the stories they have generously shared through social media, online support groups, and the published word. Regardless of how long or how well I know these incredible mothers, we all share a resolute determination to love, honour, and remember our children, even when the world admonishes us to suppress our grief, let go, and move on.

And so, today I join my fellow loss mamas in a shared day of love and grief. Today I remember:

Mariam

Raymond

Jenna

Milo

Zach

Avery

Ethan

Henry

Elliot

Owen

Ireland

Ava

Mya

Timara

Melaney

Hope

Jack

Lucy

Josie

Everett

Charley

Angel

Grace

Tate

Elijah

Annabelle

Gabriella

Jensen

Jordan

Lincoln

Maeve

Sidney

Rayna

Brielle

Sam

Leo

Lucey

Maxwell

Jeremy

Victoria

And all the other precious lives that ended far too soon, but still made an eternal imprint on our minds and hearts.

If there are loss moms and dads in your life, please remind them today that their babies will always be loved and never forgotten.

It is Thanksgiving weekend in Canada, an occasion that I have been bracing myself for throughout the past few weeks. Not only is this the first family holiday that I would have spent with my almost four-month-old daughter, but it is also the one year mark from which I discovered I was pregnant with Leah.

This time last year, I was quietly wondering about the possible reasons why my waking basal body temperatures had not returned to their normal pre-ovulatory range. Despite my lingering confidence in the natural birth control method I had employed without fail for the previous three years, I still decided to opt out of the glasses of wine that were offered to me during the various dinners I shared with family and friends over the course of the weekend.

By the time Thanksgiving Monday rolled around, the suspense became too much. To put my mind at ease, I finally decided to buy a home pregnancy test. It was a good thing that I purchased a double pack, as in my impatience I did not take the time to read the directions and complete the first test properly. I took my time with the second test and left to walk my dog before reading the result. During this time I snickered to myself as I envisioned pranking my husband by telling him that the test was positive when it obviously wouldn’t be.

Little did I know that two bold pink lines would be waiting for me when I returned home, and that this day would ultimately change my life forever. While I initially kept the test, as is my tendency with any artifact that symbolizes a momentous occasion in my life, there came a time during my pregnancy when I considered throwing it out as we packed up to move to a different apartment. I was six months along at this point, and reasoned that I would soon have many items of greater significance by which to remember Leah’s earliest days in the world: Newborn clothing and toys; blankets and books; and of course countless photos and video clips that would capture the significant and mundane aspects of our life together.

When it came down to it, I couldn’t bring myself to throw the test out; it now sits in Leah’s memory box, housed along with all the other items that embody the most intimate details of her brief life. On this day, that decision is one thing I am profoundly thankful for. As for the Thanksgiving holiday in general, I find myself struggling with Leah’s palpable absence as much as I imagined I would. I am painfully aware of how different each moment of this weekend would be if my daughter was alive, and I know that each subsequent holiday will coax me further into “the other life” that I am forced to adapt to without her.

Our Thanksgiving backdrop while visiting family in beautiful Bancroft, Ontario

Despite the emotionally harrowing reality that is my new normal, I resolved to set aside some time this weekend to reflect on the things I am thankful for. To an extent it is true that Leah’s death has instilled in me a renewed perspective on life that vividly colours my every thought, word, and deed. After all, I am now counted among those who know firsthand how truly delicate and precious life is. While I still struggle to find beauty in a physical world where my daughter only remains as ashes, my life is not completely void of sunshine and laughter. And so, on this Thanksgiving Day, I want to express my gratitude for the life-giving connections that have nourished and sustained me for the past four months.

First, I am thankful for my marriage. I count myself incredibly fortunate that my husband—a notoriously private person who would likely prefer that I do not share any of what I am about to write—has been my ultimate lifeline throughout my grief journey. These days I find myself looking at him with renewed love and admiration as I consider the multiple losses and struggles that have shaped his life. Throughout the ten love-filled years that we have shared together, he actively supported his mother during her hard-won battle with cancer, and said goodbye to two grandmothers along the way. In 2016 he lost a much-beloved uncle, and then just weeks before Leah’s due date, his father died unexpectedly. While still navigating the maze of paperwork resulting from his father’s sudden death, he found himself sitting next to me in a hospital room, jointly holding our daughter while her brief struggle to cling to life ended just as quickly as it began. In the weeks that have followed, this remarkable man has been unfailingly kind, attentive, and patient when I have been downright difficult to live with. Moreover, no matter how dark my days become, he somehow manages to inject glimmers of light into the morose monotony of my Leah-less life. Even though we have been through the worst together, each morning when we awake and our eyes eventually meet, we still smile at each other just like we did when we were first married six years ago. There is a beautiful simplicity about this dynamic that is difficult to put into words, so I won’t try to.

Of course Kiwi also deserves an honorary mention

Second, I am thankful for the people who have comprised my invaluable support system throughout my grief journey. They are the ones who continue to stubbornly insert themselves into my life day after day, asking me how I am and reminding me that they are thinking about me and my baby girl. They are the ones who actively invite me to express my fear, sadness, and anger, and commiserate with me in my darkest moments. They don’t advise me to think or act in any way that does not reflect the truth of my pain, nor do they insinuate that I need to “move on” and grieve according to a mythical timeline. They are the ones who carry a piece of my pain with them every day, even though they don’t have to. They speak Leah’s name openly and welcome me to do the same, just as they understand that the depth of my grief is a reflection of my deep love for my daughter. These precious souls have demonstrated what true love and friendship mean, and I know they are the ones who will continue to weather life’s storms with me for as long as we are privileged enough to walk through this life together.

Third and finally, I am thankful for my daughter. She is the one who taught me about the incredible, all-consuming capacity for love that I did not know existed within me. As much pain as it brings me, lately I have resolved not to shrink away from the memories of pure, unadulterated bliss that I experienced during the months that I carried her. While these fleeting moments anticipated a long, happy life together that never came to pass, that does not make the joy that Leah brought me less real or less valid. Many people saunter through life without recognizing or appreciating this depth of love, and while my daughter’s unnatural absence now leaves a gaping hole in my heart, my life is infinitely richer for having known her during the brief moment in time that she was here. Exactly one year after she crashed into my world, more than anything I am thankful for the immensely strong, impossibly beautiful, dark-haired, green-eyed girl who made me a mother.

I won’t mince words: Before knowing the unspeakable pain of losing my baby girl, I could be quite the judgemental jackass.

Generally speaking, I consider myself to be an emotionally amenable and compassionate person. I am usually quick to forgive and slow to become angry. Even in the wake of Leah’s death, I am often able to give people the benefit of the doubt and appreciate their good intentions when their words or actions may be less than tactful.

But it has always been a different story when it comes to people’s general abilities to “keep it together,” whether by controlling their emotions or managing the general logistics of their lives. I have long taken great pride in my unwavering abilities to meet deadlines, keep my commitments, and project an image of personal and professional collectedness despite any personal struggles I may be facing. Likewise, I have always reasoned that it is fair to hold my peers to the same high standards as I do myself: I’m always able to keep it together, so why can’t you?

For instance, as an educator, more often than not I would accommodate students’ requests for assignment extensions and accommodations, but in my mind I would frequently think: “I made it through four years of undergraduate studies while working to pay for my housing and tuition costs, and I never once missed an assignment deadline. You need to get yourself together.” Similarly, whenever a colleague or customer would express unbridled sadness or anger at the various jobs I’ve held throughout the years, I would usually think: “I always manage to be calm and collected in social situations, even when I struggle with anxietyand seasonal depression. Why can’t you keep it together?”

Image source via Quickmeme

Needless to say, as much as I wanted to fully credit my individual work ethic and general resilience for my spotless track record of personal organization and self-control, I now realize that I never understood what it meant to really struggle. I did not know how it felt to stand by helplessly while one’s world crashes in around them, decimating any facade of control they believed to hold over their lives. I also could not have appreciated how an earth-shattering experience will alter one’s priorities, suddenly making academic deadlines and projections of emotional self-mastery seem utterly insignificant.

I will further confess that I maintained some of my delusions of self-superiority after Leah’s death. I considered it a small victory each morning when I managed to get out of bed, shower, get dressed, and trek through the day like any quasi-normal human on emotional autopilot. I similarly congratulated myself each time I maintained a cool exterior while passing newborn babies in strollers outside, their mothers seemingly oblivious to their good fortune of having a live, healthy child in tow. “You’re doing great,” I would think to myself. “You totally got this.”

It’s safe to say that any remnants of such delusions have met their inevitable demise. It all started when I woke up one morning to find that my period had arrived after an unnaturally short 23 day cycle. This was a hard-hitting blow since my previous cycle had only been 21 days long. While I wasn’t expecting to be pregnant, I had been holding out for a glimmer of hope that my postpartum body might be making progress toward regulating itself. I indulged in a brief sob fest in bed before bringing my self-pity party out to the kitchen, all the while chastising myself for allowing my volatile hormones and emotions to get the best of me: “You are not the type of woman who cries because she got her period early. You’re better than this. Get yourself together.”

I managed to suspend my crying spells long enough to get dressed and put on some makeup. While this was not the first day that I had to venture outside my apartment in a formal capacity since Leah’s death, it was the first occasion where I would have to actively engage with a group of strangers for the better part of an entire day. Still, even when I had been in the throes of my pregnancy stress and exhaustion, I was always able to keep it together when circumstances required it. Of course I could handle this social obligation.

And I probably could have. But then she showed up—in all her blissful, pregnant glory. I don’t know what her name was, yet I remember every detail that she jovially shared with the room at large: She was 17 weeks along. In two weeks they would find out the baby’s sex at the anatomy scan. Customers at work were starting to notice her baby bump. She was so lucky not to have had any debilitating nausea or fatigue.

Essentially, she was me not eight months ago, although it now seems like it was a different lifetime entirely. Suddenly all the memories of my early pregnant days came flooding back, and I felt a visceral urge to run up to this woman and join in the rousing banter: Yes, I also had an easy first trimester! I vividly remember when people started giving me quizzical looks after my belly “popped” at 15 weeks! I still recall holding my husband’s hand and shedding tears of joy when the ultrasound technician announced at the anatomy scan that my baby was a girl!

But of course I couldn’t share these things with this glowing expectant mama, because my baby is dead. I could not talk about my daughter because I am the statistic whose mere existence strikes terror in pregnant women everywhere, reminding them that things can still go terribly wrong at the tail end of a perfectly healthy and complication-free pregnancy. I knew that if I decided to share my experiences, I would not simply be a proud new mother who wants to shout her daughter’s name from the rooftops. Instead I would be the embodiment of a dark rain cloud, disquieting those around me because I had the gall to discuss the devastating reality that is my life.

So I didn’t join the conversation. Instead, I searched for sanctuary in the nearest washroom and proceeded to fall apart. I locked myself in a dingy stall and sobbed silently into mounds of half-ply toilet paper, all the while chiding myself for my inability to “keep it together.” Not only was it a profoundly humbling experience, but it was also incredibly enlightening. Suddenly I was acutely aware that sometimes people forfeit control because they are coping with life-altering, unspeakable tragedy and loss. Similarly, I finally understood that I had long participated in a culture that encourages people to privatize their pain and grief for the sake of protecting others from momentary discomfort.

With each passing day I actively carry this knowledge with me, reminding myself that the people around me are complex and resilient creatures who are fighting a plethora of battles that I know nothing about. Likewise, I remind myself that people sometimes have perfectly valid reasons for falling apart in dingy washroom stalls, and my doing so on occasion does not make me weak or deficient. Rather, it simply makes me human.